[Deelouisetx]

It's so helpful to see other posts with photos of this horrible condition. I'm so grateful I don't have the kind of swelling that others have. Do you find that it is worse when you lie down at night and try to relax? I've had CRPS for 5 months. It started after a toe surgery following a car wreck. Nerve blocks help for about a week but then it comes right back. Can't walk for more than 15-20 minutes without miserable pain. I used to go to the gym 5-6x a week and now I've gained 30 pounds. I hate myself in this condition.

[mrsD]

Welcome to NeuroTalk:

Your photos bring to mind the possibility of erythromelalgia:

Please see this thread:
Is red, burning skin neuropathy?

[Becca71]

No pics right now, but yes it is always worse at night, the redness, the swelling and the pain. I just try to watch tv, distract myself. I don't always sleep well, depends on the night, but I just stay up until I can't keep my eyes open!

[Deelouisetx]

Lucky me, I also have erythromelalgia! It was diagnosed several years ago and while the redness and burning are similar, erythromelalgia is a vascular condition. It manifests equally in both feet and both hands, comes and goes, and is clearly connected to specific triggers.

The CRPS is localized to the right foot where the damage happened and the pain is horrible and unrelenting. More severe and pervasive than the erythromelalgia.

I do think you may be right that I'm having more episodes of erythromelalgia in my hands, in response to the stress of the CRPS / RDS.



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[DejaVu]

Hi Deelouisetx,

Welcome to the NeuroTalk family.
I haven't been around in awhile, yet was reading here tonight and wanted to welcome you.

My CRPS (both feet) is much worse at night. The pain gets worse every night. I am definitely in a flare now, after having allowed skin punch biopsy testing two weeks ago. Often, by 10 pm, I am writhing in agony -- severe spasms and fire -- and cannot get to sleep until approx. 4 am.

While I had recently turned down a muscle biopsy (neuromuscular work-up), I did allow skin punch biopsies two weeks ago. I thought I could get away with the relatively superficial nature of the skin punch biopsies. No.
I should have know better. I am working with my rheumatologist and compounding pharmacist to find some relief again.

I hope you find relief soon!

Again, welcome!

DejaVu

[catra121]

I didn't vote because none of the options quite fit. I struggle with pain at night and it's usually worse at night for two reasons: lack of movement (immobilization always makes it worse and sometimes I get in odd positions at night and then when I DO try to move my pain is RIDICULOUS) and lack of distractions (so it's not always really hurting MORE but I notice it more because I don't have any distractions).

When I was at my worst with the RSD I wasn't sleeping more than 15 minutes at a stretch and no more than 2-3 hours total a day adding up all the little naps. After tDCS treatments...I was sleeping 8 hours a night with no meds. That was the best result of the treatment and let me tell you that getting a good night's sleep every night makes dealing with the pain so much better. Since my fall off a ladder back in October...I was back to not sleeping until my doctor put me on Tizanidine a month ago and now I get 5-6 hours a night. I still wake up regularly in pain but with the meds I am able to fall back asleep immediately so I am getting some rest.

I hope you get some relief soon.

[catra121]

Originally Posted by DejaVu

Hi Deelouisetx,

Welcome to the NeuroTalk family.
I haven't been around in awhile, yet was reading here tonight and wanted to welcome you.

My CRPS (both feet) is much worse at night. The pain gets worse every night. I am definitely in a flare now, after having allowed skin punch biopsy testing two weeks ago. Often, by 10 pm, I am writhing in agony -- severe spasms and fire -- and cannot get to sleep until approx. 4 am.

While I had recently turned down a muscle biopsy (neuromuscular work-up), I did allow skin punch biopsies two weeks ago. I thought I could get away with the relatively superficial nature of the skin punch biopsies. No.
I should have know better. I am working with my rheumatologist and compounding pharmacist to find some relief again.

I hope you find relief soon!

Again, welcome!

DejaVu

I'm going to be getting skin punch biopsies in July for the doctor to test me for Peripheral Neuropathy...not looking forward to it and fully expect some major flares. The last two dr appointments (one with main pain dr and my IME) they poked me many times with a needle to check my sensations...felt like I was stabbed completely through at each location with a hot poker and it lasted for a couple of days in EACH spot...but I know it was necessary for the exams from each dr. Sorry you had elevated pain.

[DejaVu]

Originally Posted by catra121

I'm going to be getting skin punch biopsies in July for the doctor to test me for Peripheral Neuropathy...not looking forward to it and fully expect some major flares. The last two dr appointments (one with main pain dr and my IME) they poked me many times with a needle to check my sensations...felt like I was stabbed completely through at each location with a hot poker and it lasted for a couple of days in EACH spot...but I know it was necessary for the exams from each dr. Sorry you had elevated pain.

Hi Catra,

Thanks so much!
I had read about your IME and was hurting for you.
I really felt I had to have the skin punch biopsies. Long story. Bottom line, need the info. I wrote a thread on this.

Yes, I understand the "immobilization" as my ankles/feet get very stiff and it can be difficult to position them in my sleep.
I have recently gotten them to remain a bit more mobile with massage, which can be tricky in and of itself, before and after sleep.
Sometimes, I massage them in the night as well.

I am making my list of "Fun and Joyful" activities after seeing this video shared by Littlepaw -- a great reminder to me!
I have had too much stress this year and have just been trying to make it through each day. I need to switch it up a bit and stimulate some dopamine!

Love All Around,